Monthly Archives - September 2015

Best Posts on Aging with HIV from This Week


Two New HIV Studies Give Access to Research Medications to People with Multi-Drug Resistance

By Nelson Vergel.
No one can deny that many patients can now suppress their HIV with effective antiretrovirals (ARVs) that cause fewer side effects. However, a vulnerable and often forgotten minority of people are still struggling with multi-drug resistant HIV (MDR-HIV) while they anxiously wait for access to lifesaving ARVs that would finally control their viral replication. Although some of these patients may have developed resistant HIV due to lack of adherence or other issues, many of them have been strictly following their doctors’ orders for years.
They’re often veterans of drug development research who have accumulated HIV resistance as they repeatedly joined ARV studies or traditional expanded access programs of a single new drug out of desperation to control their HIV viral load. As they signed up for studies that helped companies get their drugs approved by the FDA (U.S. Food and Drug Administration), many of these patients were exposed to suboptimal HIV regimens (namely, functional monotherapy or the addition of a single new active ARV to a failing HIV regimen). 
Currently, the U.S. Department of Health and Human Services (DHHS) adult HIV treatment guidelines recommend three antiretrovirals ( ARVs) be given in combination to suppress HIV. But many patients have HIV that has mutated rendering their virus multi-drug resistant (MDR-HIV). Those with MDR-HIV cannot construct a viable HIV suppressive regimen with current FDA-approved and commercially available ARVs. 
Fortunately, two companies are currently enrolling their phase 3 trials for two new drugs that provide a complete new mode of action in controlling HIV:  an attachment inhibitor (BMS-663068 from Brystol Meyers Squibb) and ibalizumab (a monoclonal antibody from Taimed Bilogics). With the encouragement from the HIV activist community, these two companies are providing access to their respective drugs for use in each one of their studies in combination to control the virus of people who have ran out of treatment options.
BMS-663068 is an oral prodrug of the molecule BMS-626529 and first-in-class HIV-1 attachment inhibitor. The attachment inhibitor is designed to work differently than entry inhibitors, a current class of drugs that targets co-receptors’ activity or fusion after HIV attaches to the CD4+ host cell. BMS-663068 is thought to work at an earlier point in the replication process to prevent the virus’ initial interaction with immune cells entirely, and thus blocks its entry into the cell.
Ibalizumab has a completely new mode of action, so most patients should respond to it when using it with at least one other active agent. It is different from the entry inhibitor maraviroc (Selzentry, Celsentri) in that it blocks the CD4 receptor on T cells rather than blocking the CCR5 co-receptor. This means it could be effective against virus that uses either the CCR5 or CXCR4 co-receptor. It is a genetically engineered monoclonal antibody administered once every two weeks intravenously. 
The studies currently enrolling share many of the same research centers across the country, so doctors can refer their MDR-HIV patients to these centers for access to both drugs at the same time. Please click on each one of these links to get more details about these studies:
Patients interested in joining these studies should talk to their physicians to have them contact the primary study coordinators listed in the two links provided.
Please feel free to contact me via email at for any more information on drug access for patients with MDR-HIV.

Webcast : Beyond the Berlin Patient- How Researchers Are Now Trying to Cure More HIV+ People

Webcast : Beyond the Berlin Patient- How Researchers Are
Now Trying to Cure More HIV+ People
By Nelson Vergel
We all read
headlines almost weekly about the latest HIV cure.   After years of being exposed to these
inflamed news reports, we may get desensitized to the fact that there is
actually progress being made in that field. 
Ever since Timothy Brown was proven to be cured, the search for a cure
for HIV has intensified.  There is more
funding now as different research groups compete to get there first.  But we have had set backs that have taught us
important lessons.  
I decided to
interview two leading HIV Cure research advocates on a google hangout (webcast)
to pick their brains about what has happened to people who have entered HIV
cure studies. In particular, I wanted to get an update on the outcome with
people who have been exposed to stem cell transfers, stem cell/CD4 cell
manipulation, and those who seemed to control the virus after stopping
antiretrovirals.  I hope you will find
this webcast as enlightening as I did!.
Here are the
video and transcript of the webcast entitled 
Beyond the Berlin Patient- How
Researchers Are Now Trying to Cure More HIV+ People
Scott Sillari:                        Hi
guys. Scott Sillari here of Vyral Marketing. Welcome back to the Power Hangout
with Nelson. Nelson, take it away. You’re the man here. I want you to lead this
and introduce us to our guest and what we’re going to be learning today.
Nelson Vergel:                  Yeah.
Thanks Scott. This is Nelson Vergel – hi guys – director of This
is a series of Google Hangouts that we’re doing once a month or so on different
topics related to HIV health.
we have probably the hottest and most important topic of all, the actual cure
of HIV. There are 33 million of us out there. Obviously, we have to take
medications every day to keep the virus suppressed, and the cure, even though
people say there is not such a thing, I mean there are conspiracy theories, we
know that many researchers right now are trying to find a cure that is
accessible to everybody in the world.
already know there is a cured patient. They call them the Berlin patient. We’re
going to talk about him, he’s actually a friend of the three of us here in the
panel, and we’re going to get into details of what’s happened after Timothy
Brown was cured. Have researchers done anything to try to duplicate what
happened to him and hopefully cure all of us. It will be a very interesting
talk. It will be around an hour to an hour and 15 minutes. We will be
transcribing it and you can watch it after the Google Hangout is over on
going to start by introducing our amazing speakers. I met these two men through
my work as an activist. I’m part of the AIDS Treatment Activists Coalition.
It’s a coalition of activists that meet with academia and government and
research and pharmaceutical companies to review and set the agenda from the
community point of view when it comes to research in HIV. Richard Jefferys and
Robert Reinhard have stood up through all the discussions and cure. These two
men are committed. They love the science. They go to all the conferences. They
read papers.
has a blog where he basically writes every month about what’s happening with
the cure. I’m very honored to have my two peer advocates and activists on this
Google Hangout. Richard Jefferys has been with the Treatment Action Group, TAG,
for the past 14 years where he now directs the Michael Palm Basic Science,
Vaccines and Cure Project. The project covers the pathogenesis and immunology
of HIV infection and advocates toward the development of immune-based
therapies, effective vaccines and a cure.
Reinhard serves as a community liaison and steering committee of the CanCURE
Research Consortium in Canada. He is also a research associate and community
team member in the Dr. Mario Ostrowski lab at the University of Toronto where
they’re researching right now HIV cure or vaccine. Robert is a member of the
IAS, Towards an HIV Cure, Industry Collaboration​ Working Group also. As you
can tell, these two men have a great experience in following HIV cure research.
be asking questions. I’ll be starting by asking them especially starting with
Richard to tell us … I mean most people who are watching this Google Hangout
have never even heard about the fact that there is actually a person that was
cured with HIV. Richard, start by describing what happened to him or even
before him if we know of any other case and then we’ll go from there.
Richard Jefferys:               Sure
thing, Nelson. Thanks for the invitation to participate today, and hello to
everybody. I think there’s been a little bit of confusion because there was
actually this two Berlin patients. One was reported back in 1998. I think it
was an individual who was treated very early after they had acquired HIV
infection with antiretroviral therapies and then interrupted treatment a couple
of times before permanently stopping. He was able to control his viral load to
less than 50 copies for many years, and so there was a lot of interest in that
individual. He was probably actually the first example of what you now read
about sometimes as called a post-treatment controller. He had certain immune
response genes that enabled him to be able to control the virus for a long time
without the need for ongoing antiretroviral therapy.
the more famous now Berlin patient is the more recent case, Timothy Ray Brown,
who underwent a really very challenging series of treatments that he needed for
cancer for acute myelogenous leukemia which is a serious cancer. He required
stem cell transplants, which is when you receive stem cells from a donor your
own immune system is wiped out by a lot of pretty toxic immune suppressants,
and after the transplant you get a new immune system that grows from those new
stem cells. What his transplant clinician, Gero Hütter, in Berlin did was find
him a donor that had this mutation that prevents HIV from being able to gain
entry into the immune cells, and so when his immune system came back from the
stem cells, it was resistant to HIV. He’s now been off therapy I think for just
about eight years, and the virus has never come back. He’s been off
antiretroviral therapy all that time.
original Berlin patient, there was an update on him recently. He still clearly
has virus in his system and seems to be controlling it with his immune response
to some degree. Timothy Brown is different because all active virus is gone.
There’s maybe a couple of trace, bits of genetic material they can detect but otherwise,
he seems to be completely cured.
Nelson Vergel:                  Yeah.
He’s HIV negative, right, Richard?
Richard Jefferys:               The
antibody responses are slowly declining. Yes.
Nelson Vergel:                  What
is this about Berlin? Why do we have two people in Berlin? I hear Timothy is
American, right? Why Berlin? What’s so special about that city anyways?
Richard Jefferys:               I
think one thing that’s really key to this case actually is that is not specific
to Berlin. It’s just that the European healthcare system enabled the transplant
doctor to go search for many, many different stem cell donors to find one that
had this unusual and quite rare genetic mutation that prevents HIV from being
able to gain entry to the cells. It’s actually a receptacle CCR5 that’s on most
of our cells but a few people have a mutation which means they don’t have CCR5.
HIV uses it as a latch to get into CD4 cells that he was able to search. I
can’t remember the exact number. It may have been 60. I don’t know if you
remember, Robert. Sixty different potential donors till they eventually found
Robert Reinhard:              It’s
255 or so. They only got one and that was even lucky, too. The odds were
extremely low to find a proper donor.
Richard Jefferys:               In
the US, the insurance would never pay for that. They’ll never pay to screen
that many donors.
Robert Reinhard:              That’s
Nelson Vergel:                  Yeah.
You were saying, and I think we can connect the whole case before we jump into
other patients that have received stem cell transplants and more fancy things
like that. The post-treatment controllers. Actually, as people may know, there
are some people that can never get infected with HIV. Like one percent of the
Northern European population has a genetic mutation that makes them basically
they can’t get HIV. It’s very small. It’s one percent, but there are some other
people and it’s very hard to predict, that they get infected with HIV, they get
their diagnosis and they start treatment and then when they start treatment for
many reasons, either side effects or something else, the virus does not come
back up.
we know, we need medications to keep the virus from replicating so we call them
– I don’t know. We keep changing terms. Richard and Robert, you correct me up.
I haven’t been to a meeting in a while – post-treatment controllers. Tell us a
little bit about … Robert, too, if you want to add, maybe we can start with
Robert on this thing about the VISCONTI Cohort and these guys or girls because
I think there are females, too, that were able to have undetectable viral load
for a while after stopping treatment.
Robert Reinhard:              I
will throughout this talk ask, just as a general thing, for Richard to correct
me if I’m wrong because I think he’s pretty sharp, but  generally, the notion of a post-treatment
controller is much different than the immunological circumstance and the
experience of Timothy Brown.
I think Richard mentioned, during the course of your natural infection, certain
cells are responsive to antiretroviral therapy. This is why people are able go
to their doctors on a regular basis and determine that they are what we call
undetectable, a word that really just shows that we can’t detect the virus
using clinically available assays, but really the virus is still hiding in
reservoirs of the body where antiretroviral therapy cannot penetrate enough to
attack the virus where it’s sleeping and hiding. That is the main barrier to an
ultimate cure.
it turns out that even under circumstances of what we think of as normal
antiretroviral therapy that globally a few select patients have been identified
in different circumstances, sometimes by accident, sometimes by design, they’ve
been discovered where they’ve gone off antiretroviral therapy either
voluntarily or in the course of some kind of monitored specifically-designed
trial or observational study. A few have been discovered to be able to control
the virus either to what we still think of as very low levels and without
antiretroviral therapy or to experience different periods of remission or
control of virus but then are later found to have to need to go back to
antiretroviral therapy.
think what Nelson you were calling before the VISCONTI cohort, they’ve become
the most famous examples of those. The VISCONTI cohort is a group of people –
depending on how you count, how many there are based on the way that
investigators have followed this group, sometimes they may go as low as 10 or
maybe up to 20, but it’s around that number – are group of patients who
received antiretroviral therapy. People think very, very soon after they first
became infected. In other words, the opportunity for the virus to establish and
make a foothold in the body, in the immune system, they think was quite
only was the size of the reservoir likely very small or less than what people
might experience during chronic infection but the potency or the ability of
their own immune system to be preserved at that point without deterioration
probably contributes to their ability to fight the virus if they go off
antiretroviral therapy.  They may also
have individual natural control.
Nelson Vergel:                  How
long have we actually followed these patients?
Robert Reinhard:              They’ve
been followed for seven years and some of them seemed to be able to control
virus going out longer than seven or eight years.
Nelson Vergel:                  But
they’re not cured, right? They still have viral replication.
Robert Reinhard:              No.
They’re not cured absolutely in the Timothy Brown sense. There is certainly
virus still on their bodies, but they seem to be able to control it at a level
that people seemed to think of as clinically desirable endpoints even when you
are on therapy.
Nelson Vergel:                  Do
we know anything about these people? What makes them so special?
Robert Reinhard:              Well,
there is the mystery. I think Richard probably has a lot better clues about
that, but I alluded to a couple of possible answers of why that’s true. One is
it’s possible that the size of their reservoir had already been controlled
because they started early. Although that answer does not work for the vast
number of other people that we also see who may have been treated early.
There’s something different about this cohort. The size of …
Nelson Vergel:                  When
we say early … I’m sorry to interrupt. When we say early, how early is early?
Robert Reinhard:              They
were given antiretroviral therapy at least within 10 weeks people think that
they’re becoming infected.
Robert Reinhard:              That
probably contributes to their ability to control virus. Like I said, when you
do control the virus at that early point, your own immune system which was
always fighting the virus when anybody ever gets infected was not deteriorated
as much as people who have late diagnosis and reduced CD4 count. In other
words, when you do become infected, you do start to engage in a battle with the
virus and you’re partially successful, but eventually you lose that battle so
their immune system has been preserved.
Nelson Vergel:                  Richard
do you want to add something else before we move on to another cohort? We have
an hour and we’re going to cover all humans that have been tried in cure
research because this is really about what we have tried already in humans not
in monkeys, not in rats but in humans and what has not worked and not worked.
Richard, anything else on the VISCONTI? Why do we call them VISCONTI anyways,
Richard Jefferys:               It’s
an acronym for something that I’ve now forgotten.
Nelson Vergel:                  Okay.
I thought it was a city in France!. It is a study acronym.
Richard Jefferys:               Yeah.
Virologic immunologic control or something rather or I think it is. I think
Robert covered it. I mean there is one not so good bit of news about that
particular cohort that just emerged recently and a bit accidentally really. It
was kind of buried at the end of a slide presentation from the recent
International AIDS Society Conference which is that a couple of people in that
cohort have quite significantly lost control of their viral load …
Nelson Vergel:                  That’s
too bad.
Richard Jefferys:               …
emphasizing that it’s not necessarily a permanent state including one person I
think has a viral load of over 100,000 copies and another developed head and
neck cancer.
Nelson Vergel:                  There’s
a new thing going on.
Richard Jefferys:               Yeah.
There’s possibly a reason to be a little bit concerned that in some cases the
immune activity that’s involved in controlling the virus may have some negative
health consequences, but that’s a difficult thing to know for sure because
there’s so few people in that situation but it’s an important thing I think for
future studies to look out.
Nelson Vergel:                  How
about this term “elite controllers”? They’re not the same as the
post-treatment controllers, right?
Richard Jefferys:               They’re
different and that they’ve typically never been on antiretroviral therapy and
they’re just people that seem to have … There’s a very strong association
with having particular genetics of your immune system and having really strong
immune responses that target HIV. Again, there are some people, even though
they control the virus very well and they’re described as elite controllers,
they can still very, very slowly over time, over decades lose CD4 T cells and
experience progression. Again, it’s not a perfect model although there’s may be
a subset of a elite controllers who control the virus extremely well who may be
a better model for something that looks more like a cure.
Nelson Vergel:                  Good.
I want to do a warning before we move on because many people who are watching
this Google Hangout have never really heard about this topic. I want to make
sure people understand the guidelines right now for treating people with HIV
are basically recommending that you get treatment as soon as you find out you
have HIV no matter what your CD4 T cells, your immune system is. That has
think some people that I’ve talked to have this fantasy that they may be elite
controllers so that their immune system will fight it off and they delay
treatment. I want to warn that this cohort, this whole cohort is very small,
less than 3% I think of the population of HIV positive. Don’t ever take that
chance to assume that you’re an elite controller and have this fantasy because
it is a fantasy. Seek treatment right away. As soon as you seek treatment, your
viral load goes down, your CD4s go up, in most cases obviously, and you stop
being infectious to others when your viral load is undetectable. That’s
something very important to know.
these gentlemen are telling us, and they will tell some more, it may in the
future – who knows? – make a difference if you start treatment very early
compared to later on when the cure eventually comes up. I believe we have no
idea. I mean we’re not talking about timeline but it’s definitely not going to
be even in the coming 10 years. There’s a lot of work to be done. I just want
to make this clarification because I don’t want this message to be taken in a
different way that can create some fantasies for some patients. Anyways, I’m
sorry Robert. I interrupted before you started talking.
Scott Sillari:                        Real
quick. Before we continue, I just want to mention, everyone that’s watching in
the upper right corner, there’s some boxes. If you click in there, there is a
question and answer application. You can ask questions throughout and we’ll try
to get to them or we’ll get to them at the end. Real quick. Before you move on,
Nelson, I got a question just about something that Richard said earlier with
this Berlin patient, Timothy. If the doctors understood what type of cells they
needed to replace these and there are certain people that they’re able to get
them from. I don’t understand. I guess I’m ignorant to medicine in general but
why can’t they replicate that type of cell to use that for some sort of cure?
Nelson Vergel:                  Yeah.
We’re going to talk about this now. That’s a good lead-in to the work that Dr.
Hütter, the German doctor, has been doing to replicate and also work that some
American doctors have been trying to do also with humans here to try to
replicate in some manner that. I think Robert or Richard can take over on
either Hütter’s – I hate to mispronounce his name but that’s a Spanish accent –
has done after Timothy Brown to see if he can do it again in other patients,
and then maybe we can move on to the work done in the United States especially
in Boston. Either one of you.
Robert Reinhard:              One
comment maybe I’d like to make going back to Timothy Brown as an individual
person, we cannot say enough about what a sort of hero and model he really
represents for activating the field of research about cure and as an example,
both medically and personally in the way he has talked about it since then. The
starting point for Timothy Brown’s story as Richard mentioned is that he only
underwent this procedure because he had already a life-threatening cancer.
People don’t go through that procedure unless they do.
Nelson Vergel:                  They
would have to fail two rounds of chemo.
Robert Reinhard:              The
great question that Timothy Brown’s case brought up for the field of cure
research is: Can we duplicate the result and can we move forward to get the
benefit in people who don’t have cancer based on the circumstances that
probably led to his cure? So, not only the replacement of cells that might have
this CCR5 mutation which are probably a very large part of the reason he was
cured but probably not the only reason he was cured, but can we employ new
techniques of chemotherapy in the circumstance of people who don’t have cancer
to give them the advantage that we think was the reason for Timothy Brown’s
that score, yes, there are companies right now and clinical trials in the works
and also a big research collaboratory effort to try to engineer T cells either
from your own body or using your own hematopoietic stem cells or generating
these cells from your own CD4 reservoir and take them out of your body and engineer
them with this CCR5 mutation and then reinstall them back into your body to
confer this protection. Again, the example of Timothy Brown under
life-threatening circumstances is giving a research program in the context of
people who don’t have cancer and probably could benefit from that approach.
Richard, you probably have some good points to head, but maybe that’s a little
bit of the context.
Richard Jefferys:               I
think that’s really important context. Somebody that you could maybe have on a
future hangout, Nelson, who you know very well is Matt Sharp, an activist who’s
actually participating in one of those gene therapy trials where they’re
modifying T cells to knockout the CCR5. He would have a lot of interesting
information on that. I think there’s been some published reports about those
trials and little bits of potentially encouraging data that perhaps some of
those individuals are able to control their viral load a little better.
also echo what Robert said about Timothy Brown. If you read any of the research
papers that have been published about Timothy and look through the procedures
that he underwent, it’s really incredible just how altruistic he’s been. I
think he’s had tissue taken from every part of his body to donate to science to
try and help the research effort so it’s really incredible.
think maybe one other thing that’s worth mentioning is just that Robert talks
about how it’s being translated for people without cancers. There are also
efforts and some studies available for people with HIV who do have cancers that
require stem cell transplants that they will try and look for donors with this
mutation to see if they can duplicate what happened to Timothy and other
people. There’s research programs in the US for both adults and children and
adolescents with HIV and cancer needing stem cell transplants. There’s a
Europe-wide one as well and so there is a way of where people that needs stem
cell transplants can see if they can get a CCR negative transplant.
bad news is that in the six people that have tried so far, and this emphasizes
just how complex and risky the procedure is, unfortunately, all of them didn’t
survive either because of the cancer being so serious or because of what they
called graft versus host disease where their body is going to reject the
Nelson Vergel:                  Yeah.
Timothy Brown almost died three times, too. Richard, where can people find out
about these studies or how to enroll? I mean who knows? Somebody listening to
this may be going through cancer and HIV or lymphoma and HIV. Where do people
find out besides maybe
Richard Jefferys:               Sure. is the central repository and then to shamelessly plug the
Treatment Action Group website :
Nelson Vergel:                  You
should. It’s great.
Richard Jefferys:               …
we do have a listing there that basically just compiles what’s available or at
least as much as we can find of what’s available on the
Nelson Vergel:                  Thank
you. Robert, do you want to add anything?
Robert Reinhard:              I
guess I just want to add another little note about these ideas and these
strategies. It does sound exciting not only about the innovation and the
possibility of this kind of scientific research to imagine the possibilities,
but when we start talking about these really major disruptions and replacement
of your immune system and marshaling these different technologies to do it, we
should be careful not to just say, “Oh, well, at least I don’t have cancer
so maybe I should try this.” It sounds emotionally appealing but every
procedure and especially these new immune-based procedures have risks of their
we were alluding to before, we think we have a good idea of why Timothy Brown
was cured but we don’t know absolutely exactly. A lot of the studies that
Richard has mentioned, we are really trying to be sensitive to those important
distinctions and it’s important to think of these early trials as really again
very early stage explorations to try to find not only the answers but also the
right questions.
Nelson Vergel:                  Yeah.
Let me ask you guys a question, a basic one because I get it all the time.
We’re talking about stem cell manipulations, transfers. As I said, this
audience may never read about HIV. What happened to the vaccine? This is a
virus. Why have we been so unsuccessful after millions of dollars in finding a
vaccine for HIV? I know it’s a very generic question but probably most people
watching this would have it. You, Robert or Richard, you can both add because
it is an answer that requires some explanation.
Robert Reinhard:              First,
I would say that we haven’t been entirely unsuccessful. I think people know
probably from following the news that it’s been a long time but after 30 years,
the first clue for successful preventive vaccine was found in a large trial in
Thailand which goes under the name of RV 144 where a limited amount of
protection from HIV infection was discovered. Following up on that vaccine
trial, there have been a number of attempts to find out why that trial have
some limited amount of protection, how can we make it larger, how can we extend
it to other people. That’s one thing to point out.
big reason of why it’s so difficult to find the vaccine is because the virus is
found in many different forms throughout the world and figuring out the
traditional kinds of blocks like whether antibodies are the reason or other
kinds of immune responses are able to block HIV have been very difficult.
Having said that, another benefit of the vaccine trials and the Thailand trial
is that people in cure research are starting to think that maybe some of the
reasons that vaccines worked, antibody or other responses might be available
for cure research as well. Those are short answers to a really hard topic that
again Richard is a great expert on but I just wanted to convey the context.
Nelson Vergel:                  Yeah.
Thank you. Richard, do you want to take a swing at the very general question?
Richard Jefferys:               Sure.
I totally agree with Robert. I think there is some really distinct signs of
progress over the last decades and I think also that the burgeoning field of
cure research has helped to rekindle some interest in using vaccines
therapeutically. There’s ongoing trials now where they’re attempting to induce
immune responses in the hope that they might help clear the reservoir of HIV
that persists despite antiretroviral therapy. It’s very early days and not
really any signs of success yet but that work is ongoing and there’s some hope
as they’ve got to understand antibody responses to the virus better, it’s
become clear that they can perhaps help target the cells containing HIV for
elimination so there’s a lot of interest in using what they call Broadly
Neutralizing Antibodies in cure research. There’s a bunch of trials already
ongoing of several different of those antibodies and the interest in combining
them, in fact plans to combine them with agents that might wake up the
reservoir in people that are on antiretroviral therapy. So, although there’s been
a lot of money spent, it is paying off and I think it’s not just going to pay
off in the prevention realm. It’s also paying off in the therapeutic research.
Nelson Vergel:                  Richard,
I was talking to you before like today, and this is a very generic question,
too. We’re trying to not only make this a science-related hangout but one that
discusses all the things that I get asked all the time like there are many
people out there that think that the cure is already available and that
pharmaceutical companies are basically not wanting to cure HIV because they
want us to take the medications for the rest of our lives. They really don’t
know, that’s why we’re doing this Google Hangout, that there is a lot of
research going on. What do you tell people when they say there is actually cure
and pharmaceutical sector is basically hiding it from the world?
Richard Jefferys:               When
you look at the certain things in history, you can understand where people can
be very suspicious of what’s going on particularly of mainstream government
institutions and so on. I think though the reality is if you look at the
example of hepatitis C particularly recently, there’s been a lot of development
of therapies that are curative essentially of hepatitis C that are effective
and are getting safer. The only thing that there is a definite profit motive
there and the bad side is that companies, they have no problem making these
curative therapies, they just want to charge a really large sum of money for
Nelson Vergel:                  A
thousand dollars a day like for hepatitis C.
Richard Jefferys:               Yeah.
I think it’s not that they don’t want to. If they could develop a cure for HIV,
if there was one already, it would be out there. It would just cost a lot of
money probably and activists will be having to do the work they did with
antiretroviral therapy to try and make sure that the price came down.
Nelson Vergel:                  All
right. Let’s switch to another topic of not cure but remission. In the media,
maybe over a year, two years ago, we were hearing about the baby that got that
cured in Mississippi. Everyone was talking about the baby that got that cured
with HIV. Can you guys bring us up to speed on what happened to the baby and if
any other babies have gone through the same experience after that baby.
Mississippi baby, they call it. Right?
Richard Jefferys:               I
think Robert follows pediatric research very closely so he might be able to
answer that.
Robert Reinhard:              Okay.
Just to clarify. The Mississippi baby was an example of what I mentioned
earlier. It wasn’t a pre-planned investigation. It was accidental, a finding
that a family which was in very difficult circumstances presented to a clinic
where the mother had not received the kind of prenatal care and care during
pregnancy that we would like to see every mother have. The child was found to
be infected at birth but luckily for that child, the medical team that was
investigating thought, “Well, we were able to determine this right away.
We’re going to put this child right away on a complete regimen of antiretroviral
therapy and see if that is helpful for this child.”
family continued to provide antiretroviral therapy to the baby but again
because of personal circumstances in the family, the child actually went off
antiretroviral therapy and when the family was able to reenter the clinic
setting, recognizing that antiretroviral therapy have not been given, it was
found that the child seemed to be undetectable. Not only undetectable in the
clinical sense but we mean normally but they couldn’t find virus no matter how
hard they looked in this child.
that circumstance continued for a period of about 27 or 28 months. Then after
28 months, without much warning but maybe with a little bit of warning, the
virus rebounded and resurfaced in that child. The child had to go back on
antiretroviral therapy and fortunately that’s been successful and the child
remains healthy and controlling the virus. The Mississippi baby had first
entered the news media as an example perhaps of the second person that might
have been cured but it turns out they weren’t.
very interesting about that child, and we shouldn’t necessarily call it a
failure, the question is not why so much the virus rebounded or why it’s
important but why did it take so long? Why was this child able to control the
virus for 28 months? Because normally when you go off antiretroviral therapy
even as a child, the rebound time is very short. That has sparked a great
effort to try to expand or to look at pediatric care and the possibility of
remission strategies for children worldwide and in other countries.
a sense, infants and babies are almost the ideal subjects for testing the idea
that if you give antiretroviral therapy right away upon diagnosis, you may be
able to control the virus when they get off of therapy because we got them
right there. We know when they were infected right away. It’s not a matter of
somebody going to get tested later on.
Canada, there has been an effort to try to find other examples of children that
are given antiretroviral therapy immediately upon birth or within the hours of
birth. Four children at the moment are being followed. They are still taking
their medication but the assays that were used to find the virus in these
children still cannot detect virus. So, it’s hopeful that maybe they will be
examples of this kind of post-treatment controller.
Nelson Vergel:                  We
hardly have any babies that get infected anymore, right? I mean you want to
make that distinction to the audience that at least in the developed world …
Robert Reinhard:              That’s
right.  But in LMIC countries it’s still
very serious, 220,000 children in 2014. We always have recognized that any
child that is born today with HIV infection is to a very large degree a failure
of the healthcare system because we’re quite able with good prenatal care, with
attention especially during the period just before delivery, at delivery and
post-delivery to make sure that every baby born to an HIV-infected mother is
virus free. A great effort in global response is to make sure that we expand on
that possibility. Nonetheless, despite best efforts, children will be infected.
We’re not there yet.
Nelson Vergel:                  That
is usually when the mother is treated for their HIV and they’re successfully
treated, they cannot pass it on to their babies at birth. Right? That’s what we
Robert Reinhard:              That’s
part of the way of preventing mother-to-child transmission along with other
things, like also giving drugs to the child for a time. A big circumstance to
be concerned about for families globally is that even if you’re successful at
preventing infection through the birth process, breastfeeding continues to be a
period where it’s possible to transmit virus.
Nelson Vergel:                  That’s
true. Guys, we were talking about controlling the virus after treatment. Do you
want to discuss that graph that we brought up before? Right now I think is a
good time to bring it up. Or do you guys want to add anything before we do so?
Richard Jefferys:               Sure.
Now would be a good time. I just realized there’s a couple of other cases that
are sometimes have to be somewhat similar to the Mississippi baby which is
these two adults in Boston who also a bit like Timothy Brown, they had a
serious cancers that required them to undergo stem cell transplants but they
received stem cells transplants from normal donors so they weren’t
HIV-resistant stem cells. They remained on antiretroviral therapy through these
procedures and what happened is that after the transplant had successfully
rebuilt their immune system and the cancer was in remission, when the doctors
looked for their HIV reservoir, it couldn’t be detected. I think they all
mentioned on this slide there were two individuals …
Nelson Vergel:                  Let’s
expand it if we can before we go on. Can you expand it a little, Scott? I think
it’s also hard to see the bottom because we are covering the Y axis.
Richard Jefferys:               Let
me see. Yeah.
Nelson Vergel:                  Just
put it up a little maybe or maybe decrease … There you go. Maybe the other
way around. Make it smaller I guess. I guess I want the smaller. Hey guys, just
technical issues that we go through in a live show. Well, we’ll leave it as is.
I think that will do. Just small. Yeah. We’ll leave at is. I think we can make
it work.
Richard Jefferys:               I
think that’s fine.
Nelson Vergel:                  Yeah.
Richard continue. I’m sorry.
Richard Jefferys:               What
they did when they realized that they weren’t able to find virus in these two
individuals, they had to stop antiretroviral therapy, they did a lot of
checking with their ethical review. People at the hospital in Boston where
these patients were being seen and eventually got permission to interrupt the
antiretroviral therapy, and similar to what happened to what happened in the
Mississippi child, there was no evidence of rebound for some period, and some
of the news, initial news stories were suggesting that there might be
additional examples of cures of HIV infection.
again, there was a viral load rebound somewhat quicker in the child one at
three months, one at eight months but I didn’t have any immune responses
against the virus and so it doesn’t seem to have been the virus is controlled.
The thinking right now is just that they had such a small reservoir that it
didn’t wake up for quite some time.
Nelson Vergel:                  Richard,
before we … I’m going to interrupt you here.
Richard Jefferys:               That’s
Nelson Vergel:                  For
everybody that is watching. ART means antiretroviral therapy which is a
combination of at least three drugs to treat HIV. The lines in the graph, we
have two green lines; one orange, one purple, one red. Those are actual people,
right? Or cohorts maybe. We can say that.
Richard Jefferys:               Sure.
Nelson Vergel:                  Not
people but they are groups of people. Some are one person . The red one is the
only one that is flat throughout and that’s Timothy Brown?
Richard Jefferys:               Yeah.
Nelson Vergel:                  The
purple one is the VISCONTI trial, the people we talked about that controlled
their virus at a low level after stopping treatment and then the orange one
that goes up later on, the viral load goes up is the Mississippi child right
after 28 months. The green one on top of that is the Boston, I guess one of the
Boston patients. Eight months? What did it say? The other Boston patient their
viral load goes up after three months of stopping.
Richard Jefferys:               Yes.
I think that beige one is what typically happens when somebody stops
antiretroviral therapy where it comes back within a few weeks.
Nelson Vergel:                  What
we want is everybody to be in a flat line on zero, right? Because when you’re
cured, you have zero viral particles. You may have like you said remnants of
the virus like Timothy has but they’re not real viruses, right?
Richard Jefferys:               That
seems to be the case. I think the other important thing about the Boston
patients and the Mississippi child is that during that period when they were
off antiretroviral therapy, it wasn’t just the viral load is undetectable. All
these other very sensitive measures that they have of HIV DNA that they call
the reservoir outgrows to see if they can find virus that can replicate. They
couldn’t find that anywhere. I think they even looked in different tissues of
the Boston patients and they couldn’t find it. It really seemed to be just no
viral activity for that period and then unfortunately, it started up again.
Nelson Vergel:                  Would
you say we’re going through a rough period or are we … I know Robert is very
… His language is very optimistic. He says we’re not failures. We’re
learning. Obviously, we are learning through all these cases but at the same
time, are we starting to lose hope or are we getting into an area where …
Everybody, I mean I get people emailing me at where I answer
questions about the latest cure. Everybody watching this Google Hangout, if
you’ve been on Facebook or on TV or radio whatever, we’ve heard about the
latest researcher that found a cure. People are getting either numb to the word
cure or they’re getting cynical about the word cure. Is excitement starting to
fade away after Timothy was cured? Anybody can answer that. Robert or Richard.
Robert Reinhard:              I
think I’d like to go back to a little thing about what Richard was just saying
that even with this very sensitive, very particular assays and sampling in the
tissue where for the period of remission we couldn’t find it and then it comes
back, it just shows you really how difficult scientific question this area of
study has become. Like any kind of very difficult and very important … I mean
you started out, Nelson, by reminding everybody that globally millions of people
who have HIV are living under a lot of different circumstances. How can we turn
these few example, I mean we’re talking about people 10, 20, 30 people compared
to millions of people who have HIV.
are the clues that we’re learning from them? I think we are learning a lot of
clues, but to me, when I read these newspapers accounts of another person,
another cohort, what it reminds me of is not that these are necessarily going
to be the examples of cure. It reminds me of how people should still be interested
in research. The interesting participation of humans right now is not so much
clinical trials although they are important. I’m more interested in people
getting interested in the idea of allowing sampling or explorations of where
the reservoir is,  not so much in the
example of a clinical trial with an intervention, so that we can answer these
questions. Why does it come back? Where is it hiding?
a great need for people to be engaged in the questions of answering not only
did they have cure remission but why? What can we learn by exploring samples in
their body? That’s an earlier stage and I think there is hope if we continue to
look deeper.
Nelson Vergel:                  Richard?
Richard Jefferys:               It
can be difficult because the media is not great about writing about science
generally and it will always go for the headline type of story. I think when
you read a lot about cure for HIV, it’s a particularly potent thing because
this has been heavily stigmatized infection and so there’s a powerful desire,
an understandable desire out there to get to a cure and reading about it for
years, you do wonder actually what’s going on.
think one encouraging thing is that it has quite quickly become such a major
focus of the research effort. I think there are some quite incredible people
that may have been instrumental in making that happen including Françoise
Barré-Sinoussi who is one of the discoverers of the virus and so there’s a real
drive out there in the scientific community to get to the point where a cure is
achieved. I think that is reason for some optimism but at the same time, you
have to be wary of the headlines that make it sound that there’s going to be
some quick fix because science is challenging. It’s complicated.
are incredible, and Robert knows much more than me about some of the very
detailed practical issues that are involved in conducting research studies in
companies agreeing with each other that they’re going to combine different
therapies that might be important to combine in these studies. There’s a lot of
stuff that has to be gone through. It’s not just bureaucratic. It’s about
protecting people and making sure that in some crazy rush to test something,
someone gets killed or injured which would be really terrible.
think that there has to be a certain amount of caution but at the same time,
there are encouraging potential treatments and I think maybe the Broadly
Neutralizing Antibodies that we’ve mentioned earlier as one example of
something that does look very good which is being studied right now. There’s
going to be results from those studies within the next few years. There are
some things at a nearer time that I think are worth looking forward to. I’m not
saying they’re going to be curative but I think there’s the potential for taking
some steps forward in the near time.
Nelson Vergel:                  You
were mentioning about companies or researchers trying to collaborate but who’s
funding this cure? Do we have enough money to research the cure? A few years
ago or maybe three years ago, I made a video that actually made the point that
we didn’t have funding.
Robert Reinhard:              As
usual, if you look at the map of the source of the funding, the largest share
comes from United States. Maybe I should let Richard take this over but there
is an organization which is a collaborating effort between AVEC. TAG also
contributes and a number of people to look every at the level of funding for
now cure research but also for other research directions like vaccines and
other prevention modalities. A big boost to that level of funding came in the
last couple of years from the NIH which again under an almost
presidentially-directed initiative by NIH strategy plan to elevate your
research as a priority effort among the different funding tools or pots of
money and each year, that line of money keeps going up. Is it enough? Well,
it’s hard for people like us I think to judge exactly how many dollars are not
only being spent but are they being properly spent? Are they being well-spent?
think there is a general sense that sure we need more money but we’re competing
against a lot of other things that are also important. I think we have a great
trend that government sponsorships, foundation sponsorships, and private
company sponsorship is trending in the right direction. When we have more
successes, when we can get more initial findings that give direction. That’s
when people start piling on more money where they see a chance of success.
Nelson Vergel:                  But
there’s at least much more funding that we had just three years ago and there’s
a lot more activity.
Robert Reinhard:              Absolutely.
Nelson Vergel:                  There
are – what? – four or five conferences a year on cure stuff so it’s very
active. There is a competitive feeling in my point of view when I go to
meetings about finding a cure. What I’m finding out too is that we’re going to
get people to … We’re going to have to make them work together because the
cure may actually be a combination approach. It’s not going to be one thing.
It’s going to be a combination of maybe antibodies and stem cells and
treatment, and this flush agents that actually flush the virus out of them.
That’s it. That’s probably the hardest thing. People study different modalities
by themselves and I don’t think we are yet in the combination phases of maybe a
stem cell we combine it with treatment. Do you think that’s a barrier? Probably
one of the hardest barriers is to get people to combine their different
Robert Reinhard:              I
think as a business matter, that’s a very important consideration. I mean it’s
hard to get people to mix and match the combinations that are based purely on
what makes the best biological sense when people also have a competing interest
to think about. What is it that they can control in terms of their
operations?  I don’t want to say I’m too
cynical but we know from the preventive vaccine field that it takes a lot of
work to get combinations that make biological sense to match or harmonize with
combinations that are owned by different practices.
Nelson Vergel:                  Yeah.
Something else I want to add is that any research done in HIV cure research
actually helps the world in all kinds of immune-based research for all
different pathologies so we’re learning things working with HIV and
immune-based stuff that can be applied to other diseases. Also, we’re learning
from cancer as we know in some studies. Anyways, we’re getting really close to
… Basically, it is the time to close the hangout.
do you want to add anything? I want to find out two things. How do people get
involved if they want to get involved? There are people like you, you guys are
working your asses off trying to be the best activists that go to meetings and
advocate to review the previous search and digest it for the patients to make
sure that patients that are enrolling in studies know about the risk they’re
taking and know that this is an altruistic thing that we’re doing. Most studies
are not going to benefit or all studies right now are not going to benefit the
patients. The patients enrolling in these studies are basically doing it to
help the world.
and Robert and myself and others are not as I said as much involved as they are
working hard and they need help. How do people get involved in HIV cure
research activism? (b) How do they contact you? (c) Where can they learn the
basics? One more thing to add. You guys work for nonprofits. Do you guys
actually take donations from people? I have four and I’ll remember them again
if you guys forget. Let’s start with how do people get involved. Richard.
Richard Jefferys:               I
think there’s a few different groups there. There is actually some talking
about funding, the National Institutes of Health and the US Funds, the Martin
Delaney Collaboratories. There’s going to be some new ones funded. There’s
community advisory boards for those collaboratories. If you go to the websites,
if you look up Martin Delaney Collaboratories, there’s contacts there for
people and you can ask about getting involved, and particularly look out next
year when there will be an announcement from the National Institutes of Health
about newly-funded collaboratories. They’ll say where they’re located and it
will be possible to contact people if you’re interested. I think also, the
amfAR is supporting a lot of research. I think in terms of donations that money
definitely goes to research projects. They’ve funded quite a lot of innovative
research there.
Robert Reinhard:              I’d
like to add a little to what Richard said and that is again, going back to
where you started out Nelson. Really the distribution of the number of people
who need cure, who deserve a cure is global and we really need to find more
ways to have community engagement, education, involvement and participation
where the epidemic is. On that score, there’s certainly an awful lot or work left
to be done and it’s great that a lot of activity has happened so far in the
United States, but really a challenge is to reach people globally First of all,
I’d just like to say having more educational opportunities like the one you’re
providing is a great thing to always be doing.
Nelson Vergel:                  Thank
Robert Reinhard:              Really
we need to think about engagement where a cure is desperately needed everywhere
because everyone deserves it.
Nelson Vergel:                  I’m
just going to plug the next hangout. Everybody thank you for taking the time.
It’s a little over an hour and it was a very dense material. We’ll have a
transcription of the material so you can actually read it. There are some words
that may or may not have made any sense to you but we’ll try our best in the
transcription to describe them to you. Our goal as I said is to bring everybody
up to speed in the fact that there are a lot that is being done to fund a cure
for HIV, there’s no conspiracy theory and remember to take your medications if
you’re HIV positive. The sooner, the better.

will have a Google Hangout every month. The next one I’m looking into two
different topics on aging and HIV. We’re going to probably talk about cognitive
function. Anyways, stay tuned and you can also as I said watch this video on
YouTube. Thank you so much and stay tuned, and find out from our emails and
Facebook postings for the next one in 30 days or so.